{"id":4469,"date":"2025-12-04T18:51:31","date_gmt":"2025-12-04T18:51:31","guid":{"rendered":"https:\/\/throughoureyes.net\/?p=4469"},"modified":"2025-12-04T18:53:15","modified_gmt":"2025-12-04T18:53:15","slug":"our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner","status":"publish","type":"post","link":"https:\/\/throughoureyes.net\/es\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\/","title":{"rendered":"Nuestro primer a\u00f1o con BPES: Lo que los padres nos dijeron que desear\u00edan haber sabido antes"},"content":{"rendered":"<p class=\"\"><\/p>\n\n\n\n<p class=\"\">El primer a\u00f1o de un beb\u00e9 est\u00e1 lleno de hitos, sorpresas y peque\u00f1os momentos que se convierten en recuerdos para toda la vida. Cuando a tu peque\u00f1o le diagnostican BPES, ese primer a\u00f1o puede venir con citas adicionales y nuevas preguntas, pero tambi\u00e9n est\u00e1 lleno de alegr\u00eda, descubrimiento y conexi\u00f3n.<\/p>\n\n\n\n<p class=\"\">Recopilamos las ideas de padres que han recorrido este camino. Esto es lo que dicen que desear\u00edan haber sabido en esos primeros d\u00edas.<\/p>\n\n\n\n<p class=\"\"><strong>1. Las primeras semanas son de orientaci\u00f3n, no de tener todas las respuestas.<\/strong><\/p>\n\n\n\n<p class=\"\">Muchos padres describen los primeros d\u00edas tras el diagn\u00f3stico como un torbellino de palabras nuevas y m\u00e9dicos nuevos. No pasa nada si al principio te sientes abrumado.<\/p>\n\n\n\n<p class=\"\">Qu\u00e9 ayuda:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li class=\"\">Llevar un cuaderno a las citas,<\/li>\n\n\n\n<li class=\"\">Pedirle a los m\u00e9dicos que expliquen las cosas en un lenguaje cotidiano,<\/li>\n\n\n\n<li class=\"\">Pedirle a los m\u00e9dicos que expliquen las cosas en un lenguaje cotidiano, <a href=\"https:\/\/www.youtube.com\/@throughoureyescharity\">https:\/\/www.youtube.com\/@throughoureyescharity<\/a> to gain information,<\/li>\n\n\n\n<li class=\"\">Recuerda que est\u00e1s aprendiendo sobre la marcha: nadie espera que te conviertas en un experto de la noche a la ma\u00f1ana.<\/li>\n<\/ul>\n\n\n\n<p class=\"\">Lo m\u00e1s importante: no es necesario resolver todo el recorrido en el primer mes.<\/p>\n\n\n\n<p class=\"\"><strong>2. Las citas ser\u00e1n m\u00e1s manejables con el tiempo<\/strong><\/p>\n\n\n\n<p class=\"\">Al principio, puede parecer que te est\u00e1s preparando constantemente para la siguiente visita m\u00e9dica. Pero a medida que conoces a tu equipo y entiendes para qu\u00e9 sirve cada cita, el proceso se vuelve m\u00e1s fluido.<\/p>\n\n\n\n<p class=\"\">Las padres a menudo dicen:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li class=\"\">\u201cFinalmente aprend\u00ed exactamente qu\u00e9 preguntas hacer\u201d.<\/li>\n\n\n\n<li class=\"\">\u201cTuve m\u00e1s confianza para defender a mi hijo\u201d.<\/li>\n\n\n\n<li class=\"\">\"Me di cuenta de que a las m\u00e9dicos les importaba tanto como a m\u00ed\".<\/li>\n<\/ul>\n\n\n\n<p class=\"\">D\u00e9jate llevar por el rol. Lo har\u00e1s.<\/p>\n\n\n\n<p class=\"\"><strong>3. Construir una red de apoyo hace que todo sea m\u00e1s ligero<\/strong><\/p>\n\n\n\n<p class=\"\">Las familias destacan repetidamente lo \u00fatil que fue conectarse con:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li class=\"\">Grupos de padres<\/li>\n\n\n\n<li class=\"\">Comunidades en l\u00ednea<\/li>\n\n\n\n<li class=\"\">Amigas o familiares de apoyo<\/li>\n\n\n\n<li class=\"\">Otros que cr\u00edan ni\u00f1os con enfermedades raras<\/li>\n<\/ul>\n\n\n\n<p class=\"\">Compartir historias, incluso las cortas, puede reducir el aislamiento y crear un sentido de pertenencia.<\/p>\n\n\n\n<p class=\"\"><strong>5. Hablar sobre BPES se vuelve m\u00e1s f\u00e1cil con la pr\u00e1ctica<\/strong><\/p>\n\n\n\n<p class=\"\">Los padres suelen preocuparse por c\u00f3mo explicar el BPES a los dem\u00e1s, especialmente cuando surgen comentarios o preguntas inesperadas. Es perfectamente aceptable que sus respuestas sean sencillas:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li class=\"\">\u201cEs una condici\u00f3n que afecta el desarrollo de sus p\u00e1rpados\u201d.<\/li>\n\n\n\n<li class=\"\">\u201cEst\u00e1n muy bien y est\u00e1n bien cuidados\u201d.<\/li>\n<\/ul>\n\n\n\n<p class=\"\">Puedes elegir cu\u00e1ndo decir m\u00e1s o cu\u00e1ndo no decir nada en absoluto.<\/p>\n\n\n\n<p class=\"\"><strong>6. Si la cirug\u00eda se convierte en parte del proceso, recibir\u00e1 apoyo durante el mismo.<\/strong><\/p>\n\n\n\n<p class=\"\">Algunos ni\u00f1os con BPES podr\u00edan necesitar cirug\u00eda. Los padres suelen decir que la idea era m\u00e1s aterradora que la realidad, porque los equipos m\u00e9dicos les explicaron todo paso a paso.<\/p>\n\n\n\n<p class=\"\">Las reflexiones comunes incluyen:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li class=\"\">\u201cNos sent\u00edamos muy preparados cuando lleg\u00f3 el d\u00eda\u201d.<\/li>\n\n\n\n<li class=\"\">\u201cNuestro hijo se recuper\u00f3 m\u00e1s r\u00e1pido de lo que esper\u00e1bamos\u201d.<\/li>\n\n\n\n<li class=\"\">\u201cFue emotivo, pero est\u00e1bamos orgullosos de lo resilientes que fueron\u201d.<\/li>\n<\/ul>\n\n\n\n<p class=\"\">Nuevamente, cada ni\u00f1o es diferente y el asesoramiento m\u00e9dico guiar\u00e1 cualquier decisi\u00f3n.<\/p>\n\n\n\n<p class=\"\"><strong>7. Tu beb\u00e9 es m\u00e1s que un diagn\u00f3stico<\/strong><\/p>\n\n\n\n<p class=\"\">Los padres constantemente dicen que desear\u00edan haber sabido con qu\u00e9 rapidez el BPES pasar\u00eda a un segundo plano en la vida cotidiana.<\/p>\n\n\n\n<p class=\"\">S\u00ed, es importante. S\u00ed, moldea el viaje.<br>Pero tu beb\u00e9 tambi\u00e9n ser\u00e1:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li class=\"\">Re\u00edr<\/li>\n\n\n\n<li class=\"\">Alcanzando los juguetes<\/li>\n\n\n\n<li class=\"\">Aprendiendo nuevos sonidos<\/li>\n\n\n\n<li class=\"\">Desarrollando su personalidad<\/li>\n\n\n\n<li class=\"\">Uniendonos profundamente contigo<\/li>\n<\/ul>\n\n\n\n<p class=\"\">BPES no define en qui\u00e9nes se convertir\u00e1n, ni tampoco te define a ti como padre.<\/p>\n\n\n\n<p class=\"\"><strong>Una palabra final a las nuevas padres<\/strong><\/p>\n\n\n\n<p class=\"\">Tu primer a\u00f1o con BPES puede ser diferente a lo que imaginaste, pero aun as\u00ed est\u00e1 lleno de magia. El amor que brindas, el consuelo que brindas y el conocimiento que adquieres construyen la base sobre la que crecer\u00e1 tu hijo.<\/p>\n\n\n\n<p class=\"\">No est\u00e1s solo. Lo est\u00e1s haciendo maravillosamente bien.<br>Y tu beb\u00e9, tal como es, es m\u00e1s que suficiente.<\/p>\n\n\n\n<p class=\"\"><\/p>","protected":false},"excerpt":{"rendered":"<p>A baby\u2019s first year is filled with milestones, surprises, and tiny moments that become lifelong memories. When your little one is diagnosed with BPES, that first year may come with extra appointments and new questions &#8211; but it\u2019s also full of joy, discovery, and connection. We gathered insights from parents who\u2019ve walked this path. Here\u2019s [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4471,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"nf_dc_page":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[1],"tags":[],"class_list":["post-4469","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Our First Year With BPES: What Parents Told Us They Wish They Knew Sooner - Through Our Eyes<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/throughoureyes.net\/es\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our First Year With BPES: What Parents Told Us They Wish They Knew Sooner - Through Our Eyes\" \/>\n<meta property=\"og:description\" content=\"A baby\u2019s first year is filled with milestones, surprises, and tiny moments that become lifelong memories. 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Here\u2019s [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/throughoureyes.net\/es\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\/\" \/>\n<meta property=\"og:site_name\" content=\"Through Our Eyes\" \/>\n<meta property=\"article:published_time\" content=\"2025-12-04T18:51:31+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-12-04T18:53:15+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/throughoureyes.net\/wp-content\/uploads\/2025\/12\/IMG_3437-scaled.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"1828\" \/>\n\t<meta property=\"og:image:height\" content=\"2560\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"JAKUBOWSKI\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"JAKUBOWSKI\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/\"},\"author\":{\"name\":\"JAKUBOWSKI\",\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/#\\\/schema\\\/person\\\/4459bef7ee95421c1da454189c734fd5\"},\"headline\":\"Our First Year With BPES: What Parents Told Us They Wish They Knew Sooner\",\"datePublished\":\"2025-12-04T18:51:31+00:00\",\"dateModified\":\"2025-12-04T18:53:15+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/\"},\"wordCount\":606,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/i0.wp.com\\\/throughoureyes.net\\\/wp-content\\\/uploads\\\/2025\\\/12\\\/IMG_3437-scaled.jpeg?fit=1828%2C2560&ssl=1\",\"articleSection\":[\"Uncategorized\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/\",\"url\":\"https:\\\/\\\/throughoureyes.net\\\/our-first-year-with-bpes-what-parents-told-us-they-wish-they-knew-sooner\\\/\",\"name\":\"Our First Year With BPES: What Parents Told Us They Wish They Knew Sooner - 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